Sunday, January 22, 2012

Funky Nose Resolution...coming soon

My babies are sleeping in big kid beds!! We made the switch on Friday night and I have to say, I think its going pretty well. Friday night took a few hours to get them to go to sleep, but last night it was only about 30 minutes of in and out of bed with a few tears before they gave in and went to sleep. And on Saturday they slept until 8:45, and got up just after 8 this morning. Winning! I can't believe how big they are getting though. They will be 2 in less than 2 months. I really wanted to get them transitioned before Quatro makes his/her appearance so that we didn't have to deal with that once there was a new baby needing our attention. Definitely could have been worse.

The funky nose that we've been dealing with for about 3 months now will finally be addressed this Friday at the ENT. From the way the CF docs made it sound, a sinus surgery is probably in our near future, but hopefully that will fix our problem and we can get on some medicines to keep things at bay. I've been a little overprotective lately about germs, as Drew is so congested without a cold, and I think that catching something would send him into a tailspin. This year is SO different from last year, when at least one of the kids was sick at every single moment from about late October through March. It was miserable. We are extra careful about hand washing and sanitizing and ask everyone we hang out with if they are healthy before we get together. No outside germs are coming into this house this season. Well, at least not if I have anything to do with it!

I met an amazing woman this weekend. She is a 50 year old woman living with CF. While unfortunate circumstances brought her to town, it was so great to finally meet her in person and have her confirm that I am not a loon about my hand washing/sanitizing and overprotective ways. Her mom took such good care of her when she was growing up, way before they even knew what caused CF, and she is in good health today. She still spends a lot of time doing her treatments and being careful and protective of her health. If its worked for her thus far, I'm all about hopping on that train!

I also got a comment on here from a mom who has a son experiencing symptoms similar to those that a lot of CF folks have, yet her son tested negative for CF. Unfortunately I don't have her email address or any way to get back in touch with her, so if you happen to be reading this, email me! I'd love to chat!

I'll post an update after our ENT appointment. I'm hoping there is an easy solution. I would love to not need another surgery, but I guess we will do what we have to do!

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"65 Roses"is what some children with cystic fibrosis call their disease because the words are much easier for them to pronounce.

This blog, 66 Roses, is dedicated to finding the cure.

Cystic fibrosis is a life shortening genetic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). Thick mucus clogs the lungs and leads to life threatening infection. The pancreas is also obstructed by this thick mucus production, imparing digestion and leading to malnutrition. - www.cff.org